an E4/E4 brain CAN recover
Posted: Fri Aug 08, 2014 5:17 pm
This is not a sob story looking for sympathy, I'm really fine now, and actually a happy healthy person, but this is an n=1 story of E4/E4 significant brain recovery. It's to show that an E4/E4 brain CAN recover from significant insult.
Lilly said I should share it, so here goes. I have mentioned it in my introduction, here it is in detail:
Almost 8 years ago, defying gravity, I fell UP the stairs while running and hurled myself into the door frame. I was a very high achiever, holding multiple threads of work and home responsibilities. As an example it was 2 days after I had hosted a sit down dinner in my house for 30 people (self catered with some help from friends) and was working 50 hours a week. Crazy. Anyway, knocked myself out, huge gash on head. Actually went to sleep not too bad but woke up in a fog that lasted years. Had to give up my medical licence, couldn't process speech, dysphasic and dysarthric, couldn't use an ATM, dial a telephone number, read a paragraph, type a paragraph, had diplopia, left leg dragged behind me, kept falling and other bad deficits. Neuropsych testing not good. Gaps everywhere. Memory islands, stuff just didn't encode. Anyway in those days the neurology advice was to rest. I was only allowed to walk 20 mins from my front door and back a day. Could only talk for 20 mins to someone then I couldn't understand what they were saying. Had to have three sleeps a day. Told to sell my medical practice at the end of the first year because there was no longer any hope of significant cognitive improvement (which thank heavens I didn't do, I just wasn't ready to give up). Two awful dark years later, closely supervised by a team of head injury experts who were now saying this was the definitely all the recovery I was going to get (yay down to two sleeps a day :S ) and I just had to accept this reality, after falling yet again and breaking a couple ribs, I asked for and got a neurophysio assessment and programme for balance. I started walking on a treadmill holding on and watching my feet because if I couldn't see them I would fall. Six months of this my balance was improving and I noticed I could walk without watching my feet. I took my hands off the bar. At about a year I tried to run against advice...and omg I could for a few seconds and it felt wonderful....and noticed that I was getting cognitive gains. At that time there was the early evidence about BDNF and Iraq blast victims with TBI and exercise that my OT told me about because the professor doing this early research came to our country to talk to the TBI people. (I wasn't up to any internet searches lol). So I thought - well I need the balance, I have no idea what to do during the day when I'm not sleeping except play World of Warcraft and try and cook dinner and eat and cry, so what have I got to lose.
So I started running on the treadmill for 40 to 60 mins a day. Heart rate over 160/min. I started swimming a kilometer some days. I hired a personal trainer twice a week - still ongoing. That was the only intervention after 2 years of minimal improvement. Exercise. No supplements, no diet change, just daily exercise. At year three, I had started to get measurable cognitive and physical gains. By year five, I was back up to 95th to 99th centiles on full neuropsych testing and got my full medical licence back. I was able to work at my busy practice (built up obviously over about a year or two) 25 hours a week.
Around year four-five, I developed a sulphite allergy which caused anaphylaxis. So I was forced to clean up my diet which had been patchy at best. (I had obviously become overweight, initially lost 10kgs with the diet cleanup, recently dropped another 6kg with the E4/E4 diagnosis, plan to drop another 6kg). Fascinatingly I still continue to have cognitive and physical gains. I don't know how much of the continued gains are due to the ongoing exercise and how much is due to the added dietary changes. The diet has been very mainstream "healthy" in a Michael Pollan-like fashion(I'd say 20-25% protein (grass fed beef, lamb, local fish & shellfish, free range poultry/eggs), 20-25% fat, 50- 60% carbs (emphasis on veggies and fruit but including whole grains (bake my own bread) and legumes) zero sugar/sucrose, zero processed stuff for obvious reasons that anaphylaxis=death, no supplements) . My speech difficulties only come on if I am very tired. I can work 10 hours a day at my old breakneck speed. I don't need to jot down notes during a consultation any more, I can hold the threads in my head again. My physical and balance deficits are minor and still improving. My partner of 18 years in my practice says I am back as sharp as I was before. I don't need a prism in my specs any more. I can kick-box and not fall over. I am learning to play the piano. I've started learning a foreign language with a different alphabet. It's beyond belief...
The neurologists just shrug and say well done. They can't tell me what my brain did to recover so late after the injury. I guess it's a combination of a lot of complicated stuff and just dogged persistence. The details don't matter. But this experience has made me very hopeful that our brains possibly aren't as fragile as we fear. I'm hoping that sharing this will help your fears, as it has helped mine learning my E4/E4 status.
And I know without a doubt the obvious - exercise and a sensible diet - really, really, really help.
Lilly said I should share it, so here goes. I have mentioned it in my introduction, here it is in detail:
Almost 8 years ago, defying gravity, I fell UP the stairs while running and hurled myself into the door frame. I was a very high achiever, holding multiple threads of work and home responsibilities. As an example it was 2 days after I had hosted a sit down dinner in my house for 30 people (self catered with some help from friends) and was working 50 hours a week. Crazy. Anyway, knocked myself out, huge gash on head. Actually went to sleep not too bad but woke up in a fog that lasted years. Had to give up my medical licence, couldn't process speech, dysphasic and dysarthric, couldn't use an ATM, dial a telephone number, read a paragraph, type a paragraph, had diplopia, left leg dragged behind me, kept falling and other bad deficits. Neuropsych testing not good. Gaps everywhere. Memory islands, stuff just didn't encode. Anyway in those days the neurology advice was to rest. I was only allowed to walk 20 mins from my front door and back a day. Could only talk for 20 mins to someone then I couldn't understand what they were saying. Had to have three sleeps a day. Told to sell my medical practice at the end of the first year because there was no longer any hope of significant cognitive improvement (which thank heavens I didn't do, I just wasn't ready to give up). Two awful dark years later, closely supervised by a team of head injury experts who were now saying this was the definitely all the recovery I was going to get (yay down to two sleeps a day :S ) and I just had to accept this reality, after falling yet again and breaking a couple ribs, I asked for and got a neurophysio assessment and programme for balance. I started walking on a treadmill holding on and watching my feet because if I couldn't see them I would fall. Six months of this my balance was improving and I noticed I could walk without watching my feet. I took my hands off the bar. At about a year I tried to run against advice...and omg I could for a few seconds and it felt wonderful....and noticed that I was getting cognitive gains. At that time there was the early evidence about BDNF and Iraq blast victims with TBI and exercise that my OT told me about because the professor doing this early research came to our country to talk to the TBI people. (I wasn't up to any internet searches lol). So I thought - well I need the balance, I have no idea what to do during the day when I'm not sleeping except play World of Warcraft and try and cook dinner and eat and cry, so what have I got to lose.
So I started running on the treadmill for 40 to 60 mins a day. Heart rate over 160/min. I started swimming a kilometer some days. I hired a personal trainer twice a week - still ongoing. That was the only intervention after 2 years of minimal improvement. Exercise. No supplements, no diet change, just daily exercise. At year three, I had started to get measurable cognitive and physical gains. By year five, I was back up to 95th to 99th centiles on full neuropsych testing and got my full medical licence back. I was able to work at my busy practice (built up obviously over about a year or two) 25 hours a week.
Around year four-five, I developed a sulphite allergy which caused anaphylaxis. So I was forced to clean up my diet which had been patchy at best. (I had obviously become overweight, initially lost 10kgs with the diet cleanup, recently dropped another 6kg with the E4/E4 diagnosis, plan to drop another 6kg). Fascinatingly I still continue to have cognitive and physical gains. I don't know how much of the continued gains are due to the ongoing exercise and how much is due to the added dietary changes. The diet has been very mainstream "healthy" in a Michael Pollan-like fashion(I'd say 20-25% protein (grass fed beef, lamb, local fish & shellfish, free range poultry/eggs), 20-25% fat, 50- 60% carbs (emphasis on veggies and fruit but including whole grains (bake my own bread) and legumes) zero sugar/sucrose, zero processed stuff for obvious reasons that anaphylaxis=death, no supplements) . My speech difficulties only come on if I am very tired. I can work 10 hours a day at my old breakneck speed. I don't need to jot down notes during a consultation any more, I can hold the threads in my head again. My physical and balance deficits are minor and still improving. My partner of 18 years in my practice says I am back as sharp as I was before. I don't need a prism in my specs any more. I can kick-box and not fall over. I am learning to play the piano. I've started learning a foreign language with a different alphabet. It's beyond belief...
The neurologists just shrug and say well done. They can't tell me what my brain did to recover so late after the injury. I guess it's a combination of a lot of complicated stuff and just dogged persistence. The details don't matter. But this experience has made me very hopeful that our brains possibly aren't as fragile as we fear. I'm hoping that sharing this will help your fears, as it has helped mine learning my E4/E4 status.
And I know without a doubt the obvious - exercise and a sensible diet - really, really, really help.